Notes From Supergirl

My Diary from the Trenches

Day 159


Long time no blog. I’ve been busy and tired, all in a generally good way. On Thursday I saw my doctor for my follow-up appointment and he cleared me of wearing the mask and I’m free to eat what I want now. The only restriction is no raw shell fish for the rest of my life, so no more raw oysters. I don’t often indulge in those so I think I’ll be okay. Sushi is fine as long as there is no shellfish involved. Although he was quick to clear me of everything, I haven’t gone anywhere in public yet except for the hospital. I still plan to stick close to home for at least another week or so. I go back in again this Thursday and will, as always, be curious to see where my counts are. Last Thursday my platelets had come up to 38,000 which was a higher jump than expected. I’m hoping that this Thursday they will be working there way up over 50,000 and towards the normal range.

The first week at home was good but exhausting. I had planned to spend my days resting and catching up on things but on Wednesday I had to pick my 2-year up early from school because he was running a fever. He ended up having a double ear infection and had to stay home the rest of the week. Between taking care of him and two 8 am appointments Thursday and Friday at the hospital, it was hardly relaxing. By last night I felt like I was sleep walking through dinner. Next week everyone will go back to school and I hope to get some rest in.

Everything else is going well. My anxiety is letting up a little bit. I have had a mild pain that comes and goes in my ride side but the doctor didn’t seem concerned about it because all tests looked good. Just to be sure he sent me for another CT scan on Friday but I haven’t heard back on those results yet. Knowing that he wasn’t overly worried about it, I haven’t been worrying about it either. My first thought was, of course, my liver again but I am happy to report that my temperatures have been perfectly normal since coming home and there are no other signs of infection. As several people have told me, the unfortunate result of this experience is that every little ache and pain or sign of fatigue will probably trigger some fear of something awful and it is something I will just have to get over. I can’t live in fear of my health and I truly believe that a healthy mind leads to a healthy body. So with that, I am focusing on my living my life right now and that’s it!

Day 154


Well I made it home for Halloween! I came home yesterday afternoon and surprised the kids. They were very excited, Ty especially since it was all he kept asking for. We had a great night trick-or-treating (so great to run into Amy and the family!). I was so glad to be here for it. As we made our way around the neighborhood, Ty kept telling people “mommy just came home from the hospital TODAY!” A little embarrassing, yes, but his enthusiasm and joy was heart-melting. Today I just took it easy with reading, resting and light housework. I will be staying in the house for the next couple of weeks, avoiding crowds and germs. I’m supposed to wear a mask whenever I leave the house so that’s further incentive to hibernate for a little while. My counts are also still in the process of recovering and my platelets were only 13,000 when I left. I don’t go back to the hospital until Thursday at which point I’ll be eager to see where things stand. I’m still taking my “vitals” every four hours and fortunately no temperatures. Last night I was a little anxious but I read a fantastic article about meditation today and it really helped me to use meditation as a better tool to relieve the anxiety and the worries. Although I say I have been meditating for the the last few months, my mind is a wandering mess and it’s been hard for me to find true peace in it. I have to say that today may have been the first time that I started to reach a true state of calm.

Before I sign off, I want to thank my mother-in-law, Ginger, for coming and staying this past week. It was an enormous help to the entire family and very much appreciated. I may blog a little less frequently over the next few weeks, which is indication I have far more to do than sit around all day! However, I do plan to continue this as I move through the next phase of this. Right now I am focusing on recovery from the transplant. Sometime in the next month or so I am so supposed to start a maintenance phase that involves a low-dose outpatient chemo every six weeks for about a year. In the meantime, getting well for the holidays – and the long haul – is all that I am thinking about.

Newer Entries »